Grace Heppes is the Outreach & Education Coordinator for the "Center for Misophonia and Emotion Regulation" at Duke University's Department of Psychiatry & Behavioral Sciences.
Q: Where did you grow up, and how would you describe your childhood?
A: I grew up about an hour and a half above New York City in Otisville, NY. My two older sisters, my older brother, and myself were raised in a loving home by our mom and dad. I was a busy kid. I played several sports, I was a percussionist, I was involved in clubs at school, and I took my grades very seriously. I loved to play outside with my neighbors and siblings, eat ice cream and Oreos, spend holidays with my extended family, play video games with my brother, and watch Hannah Montana. I look back on my childhood with a smile.
Q: When did you realize you had Misophonia?
A: I began to experience consistent symptoms of Misophonia when I was 13 years old. I remember sitting at the dinner table with my family and feeling like I was being tortured. I didn’t understand why I was experiencing such an intense, negative reaction to hearing my family eat. Every night I would sit down for dinner, bawl my eyes out, and shove food down my throat as fast as I could so I could escape to my room. My family did not understand what was happening to me, and neither did I. Was I just becoming an emotional, hormonal teenager? Why didn’t my siblings go through this, too? Was I just fitting the stereotype of being the sensitive, overdramatic youngest child? What was wrong with me?
The onset of my Misophonia was a very dark, difficult, and confusing time for me, so I can only recall bits and pieces of memories from those years. I think either my mom or my oldest sister eventually discovered the term Misophonia several months or a year after my symptoms began. When I looked it up myself, I only read horror stories. I read blogs written by parents sharing how their children were suffering and there was absolutely nothing that could be done to help them. I didn’t type the word Misophonia into any search engine for a long time after that.
Q: How much of an impact did Misophonia have on your teen years?
A: Misophonia significantly impacted every single day of my teen years. For a while I still sat at the dinner table with my family, but I would blast music into my headphones. Eventually, I developed visual triggers and would get equally upset just from seeing them eat, even if I couldn’t hear them. So, I started to eat dinner in a separate room alone, and that is still what I do to this day when I visit home. Unfortunately, my parents are my worst triggers. I cannot stand to hear them clear their throat, swallow, etc., but I can tolerate it when other people do. I still get triggered by other people making those noises, but it is not as extreme. I would wear headphones 24/7 in my house. I still shared a room with one of my sisters and the walls are thin, so my own bedroom didn’t feel completely “safe” either.
It took me a few years to tell any of my friends about my Misophonia. I felt like no one would believe me and that they would think I was being overdramatic. In eighth grade I was at a sleepover with two of my friends, and they were eating pretzels. I tried to wait it out and keep all my emotions in, but I couldn’t handle it. I broke down into tears, covered my ears, and buried my head in my lap. They immediately asked me what was wrong, and it took me several minutes to finally get the words out. They were confused, but they were very supportive. They hugged me and told me they would try their best to avoid triggering me. That moment gave me the confidence to start opening up to my close friends about my struggles.
School was exceedingly difficult because my friends knew about my Misophonia, but no one else did. People were constantly chewing gum, sniffling, or eating snacks during class. I couldn’t focus in class, and I’m sure I gave dirty looks to many of my classmates over the years. Towards the end of ninth grade, I left class and went to the guidance office because I couldn’t handle it anymore. I broke down in tears and explained my situation to my guidance counselor. That day we began the process for a 504 plan.
Since Misophonia is not an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM), my diagnosis of Generalized Anxiety Disorder (GAD) was used to be able to receive accommodations. My 504 plan allowed me to leave class if I needed to and to take tests/quizzes in a separate room. It was certainly not perfect. I left at least one class every day, and there would be proctors eating and other students chewing gum in the separate testing rooms. It was so frustrating, but I am lucky that my parents stood up for me and pushed my school to make the accommodations better suited to me as time went on. I am grateful for my guidance counselor’s help through all of this. I hope my high school learned from my experience and can better accommodate people with Misophonia.
Q: How did you find out about the Duke CMER, and how did you end up working for them?
A: As I was transitioning from high school to college in the summer of 2020, I was looking for ways to start contributing to Misophonia research and advocacy. I decided to look up institutions that had received grants to conduct research on Misophonia, and that is when I discovered the Misophonia Research Fund (MRF). I scrolled through their website and found their list of funded studies at the time, including one at the Duke Center for Misophonia and Emotion Regulation (CMER). I contacted CMER asking if there were any opportunities for me to be involved in their work remotely. They were unable to work with undergraduate students who were not attending Duke University, but they encouraged me to reach back out in the future. Four years later, that is exactly what I did. Coincidentally, they had just released an application for a new position at their Center, Outreach and Education Coordinator. After the application and interview process, I was offered the job. The day I received the offer was one of the best days of my life.
Q: What is the mission of Duke CMER, and what progress has it made in the field of research?
A: Duke CMER is dedicated to research, education, and clinical care for people with Misophonia and difficulties regulating emotions. We envision a future where doctors and other clinicians provide evidence-based resources and clinical services for people with Misophonia. CMER has contributed to the advancement of Misophonia research in several ways with collaborations around the world. Our Director, Dr. Zach Rosenthal, joined many leading Misophonia researchers in 2021 to form a consensus definition of Misophonia. The nature and features of Misophonia has been explored in several of our Center’s studies. CMER has also investigated how Misophonia relates to variables including stress, traumatic stress, neuroticism, emotional functioning, personality disorders, anxiety disorders, psychiatric disorders, sensory over-responsiveness, pain, and more. Our Center developed the Duke Misophonia Questionnaire (DMQ) and the Duke Misophonia Interview (DMI) as tools to assess Misophonia. These have been used both clinically and in research. Dr. Andrada Neacsiu, a clinical psychologist on our team, has been exploring neuroscience-based interventions for Misophonia. Our ongoing studies include Dr. Neacsiu’s investigation of neurostimulation as an intervention for Misophonia and a lived experience survey for both sufferers and loved ones. To participate in a study, read our publications, and learn more about our collaborations around the globe, please visit Research | Duke Department of Psychiatry & Behavioral Sciences.
Q: What are your roles and responsibilities with CMER?
A: My position is generously funded by the Brown Family and was established to raise awareness of misophonia, particularly among healthcare providers, ensuring that individuals with Misophonia have access to evidence-based treatments and resources. I offer resources to healthcare organizations around the world who can help increase awareness of Misophonia, with a strong focus on pediatricians and family physicians. I collaborate with the MRF, soQuiet, and the Misophonia Research Network (MRN) on several projects to raise awareness and share reliable information. I also manage CMER communications including our social media and our website.
Q: Has your job changed the way you either manage or perceive your condition?
A: My job has not changed the way I manage my condition, but it has changed how I perceive it. Before working with CMER, my view on Misophonia was based on my personal experience and a surface level understanding of published research. Working in this position has allowed me to read and hear so many other experiences of Misophonia from people around the world. I relate to the emotions most people express, but everyone’s story is different. Everyone has different triggers and different theories about the onset of their Misophonia. It has been interesting to witness the variability of Misophonia. I have gained a better understanding of Misophonia research now that I am part of the CMER team. They have taken time to orient me to this world, especially Dr. Rosenthal, and I am so grateful for the opportunity to learn new things every day.
Q: What advice would you give to teens who struggle with Misophonia?
A: Do not give up. When I was a teenager, it felt impossible to picture a better future, but if I had given up, I wouldn’t have lived out my dream to help others like me. I wouldn’t have witnessed the exponential increase in Misophonia research and advocacy. Many resources are available now that didn’t exist just a few years back. Take advantage of them! Resources can be found here on TEAM’s website and our website, www.misophonia.duke.edu.
You are not alone, and there is hope.
Resources and Links:
Duke Center for Misophonia and Emotional Regulation: www.misophonia.duke.edu
Instagram account: @dukecenterformisophonia
YouTube channel: https://www.youtube.com/@dukecmer
Follow Grace on LinkedIn.
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